I am a tough cookie. Very little spooks me and I have been pretty darn fearless about life. Brazen and bold, perhaps a tad too assertive; Grandmother Willow calls me a handful, my pop, a pistol. I tend to tough out a lot of hard stuff and have been known on many an occasion, to say it’s black just cause it’s white. When I was a kid, all someone had to do was tell me I couldn’t, and no double dare needed, consider it done. A driver’s seat girl I am, pushing the envelope, balking the status quo; I coasted along in life going where I wanted, when I wanted, shoulds or shouldn’ts not steering me, rules of the road not applying to moi. Always good intent, but show me a skunk, and I’d poke it. So with that, I sucked it up, shaved my head, drove myself to chemo and said, “Hook me up Marci, let’s get this show on the road.”

I believe it is what the romantic novelists have referred to so eloquently as, “The Arrogance of Youth.” It however, lasted well into my forties.

I didn’t realize how scared cancer had made me. I didn’t know this until much later.

Last month we had a tornado barrel through Raleigh, a mile from my house, and it was terrifying. The sounds in the sky that day, small children dying, just all of it. But it was about a week later when I actually drove by the places where it had touched down that I got unexpectedly emotional, seeing the raw power of the thing. It was only then that I began to cry, seeing it all, just what power it had, realizing its devastation, its potential. How close it came to killing me. Sometimes it is when we look behind us; when we look at the wreckage, and understand the power it had; it is then that we quietly say under our breath, holy shit, what just happened….holy shit.

Sometimes when we are right on top of something, too close to something, we can’t see it, it takes getting further away to see it.

I didn’t talk about cancer for a long time. I mean sure I talked about the fact that I was diagnosed, and my treatment, but I made it an elevator story and light of it and moved on. What we cancer girls won’t often tell you about is the darkest side of cancer. The private life of cancer. The thoughts and fear that come when you are laying cold on a gurney waiting by yourself, when the OR staff is telling you what will happen as they write on your body making sure they have the right side, the moment just after everyone steps out of the radiation room protecting themselves from what will be shot at you. The day you look in the mirror and don’t recognize yourself, the hours in the night where you wonder if you will die, that exact moment you see the look on the mammogram nurse’s face, the instant the first strands of hair are in your hands. The first look in the mirror after surgery and your breast is gone and you wonder just how it is that you will ever feel comfortable in this body again, feel good having sex again or swimming again, how you will ever feel desirable again. This is the darkest side of cancer, the very private life of cancer. What is not seen and what is not said, but what is known by only you. The solitary moments when you are experiencing the terror of this force bearing down on you.

The only thing worse than being scared, is being alone when you are scared and are losing control.

And you keep it in, not as a secret, but almost as something you did not realize was there, not realizing it took up space inside your head. Your brain somehow quietly, unpurposefully, recording the visceral experience of cancer.

People think survivors enjoy breast cancer events, or find each other online because we have a common diagnosis, but I think it is more the nonverbal understanding of the shared darker moments, those that we have never spoken out loud, which bond us so.

I still haven’t cried about it.

In fact, I have carefully guarded this part of cancer, never letting anyone into it. These moments remembered as a wispy presence, a shadow. Perhaps at first not knowing it was there, perhaps afraid too that if it came out, I would never stop crying. A murky pool that I was afraid to step into, unsure of its depths and thus better left alone. I still feel like I circle it, careful to avoid external shoves into it. Careful to control when and how I talk about it and put a toe in, careful to control when I think about it, careful to control when I am reminded of it, careful to pick people who surround me who don’t remind me of it when I don’t want to think about it, who don’t see me as cancergirl. Careful, so very careful, to avoid looking back at the devastation when I don’t want to.

It took time and me finding someone I trusted, with whom, like a valve letting the air off in spurts, I could set incremental bits of it free at a time. Knowing that the spew fell into these safe hands; hands which had their own scars and understood how they hurt even years later, hands which took these wisps of dark thoughts and put them safely over there, without saying yuck. Hands that were ready at the wait, for when an unexpected bubble came out, and hands which understood the need to hold tightly and guard this private pain. This letting out of the terror, it is for me a controlled process, an intensely private process, a slow process in which the potential to be quickly overwhelmed by too much is ever-present. It is like running deep into the darkest and wildest of forests and grabbing it, a leaf at a time, and running out and dropping it.

I imagine it will be a long time until the forest is picked clean.

Recently something happened that just flooded me with “breast cancer talk” and honest, it was kind of in my face because it was in a space that I had designated as my cancer free zone. It made a mess in my head to sort out, by making me think thoughts I didn’t want to think about in a place I didn’t want to think them. Forcing breast cancer to be linked to a relationship where I had been safe from cancer at least on my terms, a place where it was safe to find my own level, a haven where I had felt free from the fear of external shoves. Breast cancer had crashed into my safe zone in a somewhat offensive way. Man it made me realize how carefully I tread into the world, how carefully I guard the trauma, how carefully I tend the gate, choosing when and only when I was ready to talk, what I wrote about, what cancer events I would attend and who I would tell my history. Trying to not feel the feelings of cancer; to feel them only when I felt ready. Trusting that I would not be shoved; needing firm hands holding me safely on the shore more than I knew, a voice saying, it’s okay not to look if you are not ready.

Protect yourself at all times.

In a conversation about having reconstruction, I stubbornly dug in and asserted that I had decided I was good like I was, citing my mantra of “longevity trumps cosmetics.” I realize now that along with never grasping that longevity might occur, that really what I was, was scared. Scared that cutting could make the cancer come back, scared that the most horrible of those quiet moments of terror would recur as I lay on a gurney. Scared of going through more surgery, alone. Scared of the smell of hospitals and being cold and having to look in the mirror yet again and see a fresh hell to contend with. Scared of more medicine and drains and all that, again. Craving the status quo. Feeling safer with the devil I knew.

It reached further, scared to exercise my arms fearing poking the lymphedema skunk, and nudging awake the pain that comes with it because it feels like cancer. I get anxious now just getting sick and being around sick people; something deep inside my brain is wired that being ill and tired and down with a cold feels like cancer. Scared…of what feels like and smells like cancer, for that is how terror is recognized, that is how you sense it is there. That is how you hear what was silently recorded in your brain, when no one else heard a sound.

A friend went to a Komen event and told me how very sick some of the women there were. It made me consider, finally, how sick I must have looked at week 22 of chemo, how near death I was. How close it came to killing me.

I am glad there are no pictures.

I have struggled these last months, suspecting that making it to year five may have had something to do with it. I realize now, that my mind perceives that the physical threat has passed for me; my heart has slowed and it is now safe to go back and look at the emotional wreckage. As I see it’s aftermath, through this blog, and by setting bits free in this relationship, I am walking through the places where this monster touched down in my life and am stunned at the deep and utter devastation. The damage I never knew was there that needs repair. The pieces of my life that were strewn and mangled and twisted. Understanding only now, the power of this thing, which when above me, I could hear only the roar and my heart race.

Quietly now, I tiptoe through the wreckage. With a catch in my breath, I whisper… holy shit, what just happened….holy shit.

I can never again blindly check my coat at the door and believe that when I come back it will be there.

I realize now that I have lost at least some, of The Arrogance of Lauren.

I don’t know if that is a good thing or not.

And my soul, is now finally crying.

Out There

Out there
you’ll see it all.
The floating ends
will meet and mend,
and you will be yourself;
your fully-formed,
though always changing,
self of selves.
Every clumsy backward look
will pay for itself.
Every tear you’ve cried,
or wanted to cry,
will set your broken bones.
The rips in your heart
will no longer
need to be guarded
by steel girders,
banyan trees,
or even rice paper.
Not so much as a
dragonfly’s wing
will you need
to cover the bludgeoned place,
to protect the private you
you love so much
and hope to save intact
from what has seemed years
of relentless pummeling.

Go and live and love
in peace, my friend,
for surely there is love
to enfold you,
and life to be feasted upon:
your portion is boundless.
Love will be the more
you’ve wanted.
You will know it
when you see it.
You will love yourself
as no lover
has ever had the courage
to love;
and the warmth you’ve wanted
will line your pillowcases,
dance upon your windowsill,
and hide
at the ends of your socks
awaiting your toes.

Stubborn, feisty, contrary? No wonder I like you so much! You’ve nailed it again, my friend, as you do every week. You’ve brought to life the dark & private sides of cancer, the parts that surround us and remind us that nothing will ever be normal again. The visceral experience. I look to you for guidance on traversing this “cancer journey” and am never disappointed.

Lauren…. just want to let you know that my husband does rock and he has been amazing through this whole process. It makes me deal with it so much easier and that inside feeling that you wrote about. I love your arrogance. Does it ever go away from your mind?

You are a lucky woman Bonnie, in many ways. I say that as you will get to the place where you do not think about it everyday, and it loses some of it’s abiity to haunt you. Thank you for the kind words on my post, as I said, i think cancer took some of the edge off, and was a good thing. You might find some of the earlier posts helpful for more info on the ptsd and constant thoughts about cancer….
hugs, lauren

Lauren, I am so unoriginal each time I comment on your posts, but I am always so moved by them and they resonate on a very deep level with me. I particularly valued your comment on the secret places in our hearts – those hurts that run deep. I can’t wait to share this with readers this week in my weekly update. Marie x PS And I am stealing that poem too!

Marie, there is no one who is youer than you… a little seuss to say that no matter what you say, a compliment from a connoisseur of blogs like you makes my day. Thank you again for the nod and steal away, that is my all time favorite poem…

[…] Lauren’s latest post resonated with me deeply this week, as her blog usually does. Her words”I didn’t realize how scared cancer had made me. I didn’t know this until much later” will find resonance with many of you I am sure. She writes eloquently of the hidden sorrows and fears we carry, those the world don’t see. “People think survivors enjoy breast cancer events, or find each other online because we have a common diagnosis, but I think it is more the nonverbal understanding of the shared darker moments, those that we have never spoken out loud, which bond us so.” It is such a moving post which brings up a lot of issues and I encourage you all to read and comment. […]

Lauren,
Wow and holy shit are the words that come to mind. This is my first visit to your website. I found you via Marie.

It sounds as though we have many things in common. We’re both strong, independent women. My friends have long called me “Ramborella,” part Rambo, part Barbarella. My desire to push the envelope, do it because it’s difficult, has motivated much of my life, all the time ignoring any fears I might have. You so eloquently captured my inner thoughts, the private life of cancer, lying alone on a cold metal gurney or inside of an MRI tube.

My husband, James, was my rock through breast cancer. The first rock I’ve ever had in my life. He died the day after Christmas, December 26, 2010. It’s only been in the last two weeks that I’ve allowed myself to take that in, the implications associated with being on my own again, and how much it hurts. I can no longer tiptoe through the profound wreckage his absence has left behind.

Like everything I’ve survived–being kidnapped, a mother plagued by depression, mental illness and now dementia, surviving breast cancer–I know that I will make it through this time in my life as well because that is what I do. I survive. That is also what you’ve done your entire life.

brenda , thank you so much for the kind words. You have been through so much and we must be kind to ourselves. it is indeed okay not to look until we are ready. I look forward to reading through your website this weekend..

Beautiful, profound post, Lauren. When we can let our soul cry, I think we begin to transform the power that our fear has over us. But each of us comes to it in our own time. I still feel like an archeologist, digging through the wreckage sometimes. But I am also just beginning to feel like the architect of my life again. Thank you.